Cystic Fibrosis Center | Patient Resources

The Cystic Fibrosis Foundation (CFF) offers several valuable resources and programs to patients and their families. These include access to case managers to answer your questions about things like insurance coverage and financial assistance and a variety of opportunities for peer and community support.

• CF Foundation Compass: https://www.cff.org/support/get-help-cf-foundation-compass
• CF Peer Connect: https://www.cff.org/get-involved/cf-peer-connect
• Community Conferences: https://www.cff.org/get-involved/community-conferences
• Community Voice: https://www.cff.org/get-involved/community-voice

Information and resources for people with cystic fibrosis and their families related to food insecurity, utilities, employment, and free legal information. The fact sheets below were developed by the Cystic Fibrosis Foundation.

• CF Legal Hotline Team
• Employment and CF
• Broadband Internet Access
• Food Insecurity
• Utilities
• Guide to “Healthy” Web Surfing
• Transportation for CF Care

It is recommended that people with cystic fibrosis (CF) follow certain infection control precautions. CF affects everyone differently, and people with CF are prescribed different types of therapies by their care team. Learn about CF treatments and recommended infection control measures to support the health of people with CF. The fact sheets below were developed by the Cystic Fibrosis Foundation

• Sweat testing procedure and commonly asked questions
• Genetic carrier testing for CF
• Which Nebulizer for which Drug?
• PICC Information
• What you should know about germs
• Stopping the spread of germs
• Hypertonic saline therapy for CF: Is it right for you?

People with cystic fibrosis (CF) often have unique nutritional needs that may change throughout their lifespan. Data shows that for people with CF, pulmonary function and nutrition status are related. Learn about nutritional considerations for people with CF. The fact sheets below were developed by the Cystic Fibrosis Foundation

• Nutrition for infants with CF (birth to one year)
• Nutrition for toddlers with CF (one to three years)
• Nutrition for children with CF (four to seven years)
• Nutrition for teens with CF
• CF Nutrition: Changes through life
• School, enzymes and sports
• Pancreatic enzyme replacement
• Understanding tubefeeding
• The Extra Scoop on Vitamins
• Bone Health and CF

Learn how you can connect with others in the cystic fibrosis community who have been through a similar situation. Supports are available for patients and family members.

• Attain Health’s Peer Engagement Groups: http://attainhealth.org/peer-engagement-groups
• Cystic Fibrosis Research Institute (CFRI) Support Groups (for adults, teens, and caregivers): https://www.cfri.org/education-support/psychosocial-support-programs/
• CF Peer Connect (patients 16+ and family): https://www.cff.org/get-involved/cf-peer-connect
• Project CF Spouse: https://www.projectcfspouse.com/

Learn about the different types of tests to identify risk of cystic fibrosis (CF) in infants, detect a gene mutation, and confirm or rule-out a CF diagnosis. The fact sheets below were developed by the Cystic Fibrosis Foundation

• Newborn Screening for CF
• Genetic carrier testing for CF

Learn about organizations and programs that provide education and assistance for people with cystic fibrosis to promote overall wellness.

• Beam’s Virtual Exercise Program: https://www.beamfeelgood.com/cystic%20fibrosis
• Breathe Bravely’s Voice Lessons and Virtual Choir: https://www.breathebravely.org/
• Coach-Ed’s Athletic Scholarships and Mentoring: http://www.coach-ed.org
• Cystic Fibrosis Lifestyle Foundation’s Recreation Grant: http://www.cflf.org/recreation-grants
• Cystic Fibrosis Research Institute (CFRI) Education and Support: https://www.cfri.org/education-support/   
• CF Yogi’s Virtual Yoga for Cystic Fibrosis: www.cfyogi.org
• Piper’s Angels - Forever Stoke Scholarship: https://www.pipersangels.org/forever-stoke
• Rock CF Foundation: https://letsrockcf.org/
• The Nourished Breath’s Community Journaling: https://www.thenourishedbreath.com/

Learn about opportunities to connect with others with similar experiences and to advocate for equitable, accessible, and supportive care for the entire cystic fibrosis community.

• The National Organization of African Americans with Cystic Fibrosis (NOAACF): https://noaacf.org/
• Cystic Fibrosis Research Institute (CFRI) Peer Engagement Group – “Inhale Melanin, Exhale Power” created and geared toward individuals in the Black Community living with CF: http://attainhealth.org/peer-engagement-groups
• Cystic Fibrosis Foundation’s Community Voice: https://www.cff.org/get-involved/community-voice
• An Extended Familia for Latinos Living with CF: https://thebonnellfoundation.org/familia/en-home/
• United States Adult Cystic Fibrosis Association (information and education by and for adults with CF): https://www.cfroundtable.com/

Information translated into Portuguese, Hindi and Spanish. www.cfri.org

• Fibrose Cística em português [Portuguese]
• सिस्टिक फाइब्रोसिस हिंदी में [Hindi]
• Fibrosis Quística En Español [Spanish]

Información, recursos y apoyo para personas de la comunidad de fibrosis quística y sus familias. (Information, resources and support for people of the cystic fibrosis community and their families.)  

• Cystic Fibrosis Foundation en Español: https://www.cff.org/es/bienvenido
• Cystic Fibrosis Research Institute (CFRI) Recursos en Español: http://www.cfri.org/about-cf/cfri-resources-spanish/
• Comunidad Virtual En Español Registro: https://www.cfri.org/comunidad-virtual-registro/
• CF Peer Connect - un programa de apoyo entre pares para personas con FQ y sus familiares mayores de 16 años
• Fibrosis Quística en la Clase: https://www.cfri.org/wp-content/uploads/2022/11/CFRI.2022.ClassroomBooklet.Spanish.pdf
• Somos la Gran Familia FQ: https://thebonnellfoundation.org/familia/es-home/
• Manejando los Problemas Pulmonares y Otros Problemas Respiratorios: Para los Padres de Niños con Fibrosis Quística
• ¿Qué es CF Foundation Compass?
• FQ Y LA SALUD MENTAL: CÓMO MANEJAR LA ANSIEDAD A LOS PROCEDIMIENTOS MÉDICOS
• FQ y salud mental: cómo triunfar con el TDAH, Guía para personas que tienen fibrosis quística
• FQ Y SALUD MENTAL: DESARROLLANDO RESILIENCIA
• DEPRESIÓN, ANSIEDAD y FIBROSIS QUÍSTICA: QUÉ SIGNIFICAN LAS GUÍAS PARA USTED UNA GUÍA PARA LOS
• ¿Y QUÉ PASA CON LOS HERMANOS?: AYUDANDO A MI FAMILIA A LIDIAR CON LA SITUACIÓNDRES Y CUIDADORES

Genetic therapies – including mRNA therapy, gene therapy, and gene editing – could potentially benefit everyone with CF, regardless of mutation, and one day provide a cure for the disease. Keep reading to learn how these exciting new therapies would work. The handouts below were developed by the Cystic Fibrosis Foundation.

• Understanding Genetic Therapies: Understanding Genetic Therapies (cff.org)
• Genetic Therapies for CF - Glossary of Terms: Genetic Therapies for CF - Glossary of Key Terms (cff.org)
• Genetic Therapies for CF - Questions to Ask Before Enrolling in a Clinical Trial: Questions to Ask Before Enrolling in a Genetic Therapy Trial (cff.org)

Information and resources for people with cystic fibrosis and their families related to health insurance. Some of the fact sheets below were developed by the Cystic Fibrosis Foundation.

• CF Foundation’s Understanding Insurance
• Know Before You Choose
• Insurance Plan Comparison Checklist
• Parents’ Guide to Health Insurance (English)
• Parents’ Guide to Health Insurance (Spanish)
• Young Adult’s Guide to Health Insurance (English)
• Young Adult’s Guide to Health Insurance (Spanish)

Learn about private foundations that provide financial assistance for people with cystic fibrosis and their families, including out-of-pocket medical expenses and financial hardship.

• Bonnell Foundation Medical Assistance Program: https://thebonnellfoundation.org/financial-assistance/
• Boomer Esiason Foundation Grants: https://www.esiason.org/
• Catastrophic Illness in Children Relief Fund (MA residents): https://www.mass.gov/catastrophic-illness-in-children-relief-fund-cicrf
• Claire’s Place Foundation: https://clairesplacefoundation.org
• Co-Pay Relief Program: https://copays.org/funds/cystic-fibrosis/
• Creating Sunshine Forever: https://www.creatingsunshineforever.org/
• Ellie’s Army: https://elliesarmy.org/
• HealthWell Foundation: https://www.healthwellfoundation.org/
• Keep Swimming Foundation: https://www.keepswimmingfoundation.org/
• MBA Open Doors Foundation: https://www.mbaopensdoors.org/ourhospitals/apply-for-a-grant/
• Patient Advocate Foundation: https://www.patientadvocate.org/
• Piper’s Angels - Urgent Financial Assistance: https://www.pipersangels.org/urgent-financial-assistance
• The Assistance Fund: https://enroll.tafcares.org/
• The Cystic Dreams Fund: https://www.cysticdreamsfund.com/request-help.html
• The Joey Fund (MA residents only): https://joeyfund.org/
• United Health Children’s Foundation Grant: https://www.uhccf.org/
• Vivian Lee Foundation: https://vivisvintage.com/pages/family-assistance-program

Many medication manufacturers provide financial assistance to patients who are underinsured or uninsured to provide access to prescribed medications. Some of these assistance programs include additional incentives, such as supplying patients with vitamins or supplements.  

• Arikace (amikacin liposome inhalation suspension): https://www.arikayce.com/resources/patient-support/
• Cayston Assistance Programs: https://www.cayston.com/assistance-programs
• CREON’s CF Care Forward: https://www.creonhcp.com/cfcareforward
• Kitabis Pak (tobramycin inhalation solution): https://www.kitabis.com/patient-access/CoPayAssistance
• My AbbVie Assist: https://www.abbvie.com/patients/patient-support/patient-assistance.html
• Pancreaze Savings and Support Program: https://pancreaze.com/savings-and-support/
• Pulmozyme (dornase alfa) Financial Assistance: https://www.pulmozyme.com/patient/financial-support/assistance-options.html
• Tobi (tobramycin inhalation solution) Copay Assistance: https://www.activatethecard.com/tobi/copay.html#
• Tobi Podhaler (tobramycin dry powder) PodCare+ Program: https://www.tobipodhaler.com/podcare-support-and-savings
• Vertex Guidance and Patient Support: https://www.vertexgps.com/
• ZenPep’s Live2Thrive: https://www.live2thrive.org/

Learn about recommended accommodations for students with cystic fibrosis, types of plans that ensure students receive accommodations, and available scholarships for those who decide to pursue education beyond high school.

• CF Scholarships 2023-2024
• Day-to-Day: School and CF
• A Teacher’s Guide to Cystic Fibrosis
• CF in the Classroom

People with cystic fibrosis have a unique experience when it comes to sexual and reproductive health. Find resources to help answer your questions about health, puberty, pregnancy, fertility, contraception, becoming a parent, sexually transmitted infections, and more.

• Puberty and Menstrual Periods
• What Should I know About Sex?
• Vaginal Yeast Infections
• Contraception
• Urinary Incontinence
• Sexually Transmitted Infections (STIs)
• Pregnancy and Fertility Basics
• Deciding Whether to Become a Parent
• Talking with your CF Team about Sexual and Reproductive Health
• Talking with your Partner about CF and Sexual and Reproductive Health
• Pregnancy and CF
• Are you thinking about having Children?

People with cystic fibrosis (CF) may be eligible for wishes from wish-granting organizations. Learn about different wish opportunities and eligibility criteria. Various experiences and resources are available for individuals with CF of varying ages.

• A Wish Come True (MA & RI residents, ages 3-18): https://www.awish.org/
• Make a Wish (national, ages 2.5-18): https://wish.org/
• Take a Breather (BCH patients, ages 3+): https://www.takeabreatherfromcf.org/  
• The Sisters Wish (MA, NH, and ME residents, ages 18-30): http://www.thesisterswish.org/